Bereavement garments sometimes include bright colors, like this blue vest and pink tie.

Bereavement garments sometimes include bright colors, like this blue vest and pink tie.

Photo: Vicki Bennington/For The Telegraph

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Janet Scheller, founder and executive director of Allison’s Angel Gowns, and her “rainbow baby,” daughter, Elizabeth Hope, who is now 2 and-a-half years old.

Janet Scheller, founder and executive director of Allison’s Angel Gowns, and her “rainbow baby,” daughter, Elizabeth Hope, who is now 2 and-a-half years old.

Photo: Vicki Bennington/For The Telegraph

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Seamstress Kathie Daugherty, of Wood River, holds a bereavement gown that she created as a volunteer for Allison’s Angel Gowns.

Seamstress Kathie Daugherty, of Wood River, holds a bereavement gown that she created as a volunteer for Allison’s Angel Gowns.

Photo: Vicki Bennington/For The Telegraph

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Allison’s Angel Gowns founder and executive director Janet Scheller with her husband, Dustin, and daughter, Olivia Grace, 5, front left, and Elizabeth Hope, 2, front right, holding a teddy bear created by Molly Bears to be the same weight as Allison at birth. less

“Snugglers” are created and donated for babies who are too small to dress in a gown.

“Snugglers” are created and donated for babies who are too small to dress in a gown.

Photo: For The Telegraph

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Angel gowns are made in sizes from preemie to extra large.

Angel gowns are made in sizes from preemie to extra large.

Photo: For The Telegraph

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Angel gowns often include touches like roses and lace with an accompanying bonnet.

Angel gowns often include touches like roses and lace with an accompanying bonnet.

Photo: For The Telegraph

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Seamstresses Brenda Nurnberger, of Brighton, seated left, Chris Taul, of Jerseyville, seated center, and Kathie Daugherty, of Wood River, seated right, gather together to make bereavement gowns for Allison’s Angel Gowns, a nonprofit organization started by Janet Scheller, standing, in memory of her daughter. less

The year 2012 changed the life of Janet Scheller and her family forever.

“My husband, Dustin, and I were able to meet our daughter, Allison, and spend 24 hours with her,” Scheller said. “She changed our family in a great way. She’s still part of us.”

When Scheller discovered that she was pregnant in the spring of that year, she felt that something wasn’t quite right, though doctors said her pregnancy was progressing as expected. This was her second pregnancy, and it just didn’t feel the same as it did the first time.

At an early ultrasound, they discovered they had another baby girl. Their older daughter, Olivia, is now 5. Scheller was excited, but still had an uneasy feeling.

Subsequent ultrasounds indicated that her instincts were right. A heart defect was suspected. Then other anomalies began to appear. In the end, Allison was diagnosed with a chromosomal abnormality called trisomy 13. They were told that she would not survive, and that Scheller would most likely not carry her to term.

“I wanted to carry her as long as I could, and Dustin and I wanted to give her the best shot possible,” Scheller said. “We didn’t want her to feel pain or to suffer, but wanted to give her a chance.”

They were referred to Barnes-Jewish Hospital in St. Louis where there is a Neonatal Intensive Care Unit and met with doctors who gave them hope and possibilities of treatment if she did better than expected. Scheller went to the hospital once a week for biophysical profiles that checked for signs of fetal distress, and checked movement and heart rate.

“On December 20, she didn’t pass her tests,” Scheller said. “I was only 35 weeks pregnant, but doctors said if we wanted to meet her alive, we should induce labor then.”

Allison was born at 4:10 a.m., Dec. 22, and though the Schellers had been told Allison would never cry — she did. They were able to meet her, tell her they loved her, make memories and spend the 24 hours of her short life together. She died at 4:25 a.m., Dec. 23.

Only one in 18,000 live births are diagnosed with trisomy 13, but as Scheller discovered, there are many babies lost each year, each month, each day, for many reasons. In fact, Scheller also has felt the loss of three infant nephews.

September is Infant Mortality Awareness Month, and Oct. 15 is Pregnancy and Infant Loss Remembrance Day. More than 23,000 infants died in the United States in 2013.

“One-in-four pregnancies end in a loss of some kind,” Scheller said. “I wanted to find a way to help other parents who have lost a baby.”

When Allison died, Scheller said she hadn’t even considered how she would dress her for the funeral.

“My pastor bought a gown for her that she intended as a baptismal dress, and I decided that it could also be a bereavement gown,” she said. “The more I thought about it later, the more I realized that this is something that all parents who have lost a child could benefit from.”

In 2014, Scheller started the nonprofit Allison’s Angel Gowns in memory of her daughter.

While Scheller is not a seamstress herself, she put out a call for women who could sew. And donated wedding gowns and bridesmaids dresses provide the fabric, materials and trimmings for infants’ gowns or outfits, depending on gender and what parents want for their baby.

The response was overwhelming. Now armed with a volunteer staff of around 40 seamstresses, Scheller takes care of the administration work, answering emails, cleaning wedding gowns, packaging and mailing gowns to hospitals, along with the help of other volunteers, two who serve as hospital liaisons. Her husband helps package, pick up and deliver dresses.

“I didn’t know Janet, but I saw the post on Facebook through another friend,” said seamstress Kathie Daugherty of Wood River. “I saw it by chance, and I felt like I was meant to be part of this.”

Likewise, Chris Taul, of Jerseyville, and Brenda Nurnberger, of Brighton, heard about the need for seamstresses and jumped at the chance to help.

“It’s very fulfilling, but it can be heartbreaking,” said Taul, who sews to honor her grandbaby. “And I do it for me, too. I feel like life is better when I am sewing these gowns.”

“I feel like I’ve found my purpose,” Nurnberger said, who volunteers her sewing skills in memory of her niece, Amanda, and in memory of the baby of a former co-worker.

The organization does not charge for the baby gowns. In two years, Allison’s Angel Gowns has donated 5,000 bereavement gowns or outfits, which are now in 90 hospitals in 30 states.

Locally, the gowns are available at Alton Memorial Hospital and Saint Anthony’s Health Center, and hospitals in Breese, Greenville and Maryville. In St. Louis, the gowns are available at Barnes-Jewish Hospital and Cardinal Glennon Children’s Hospital, and others in the region, as well as those as far away as New York, Los Angeles, Hawaii and Alaska.

A typical order is 50 gowns for each hospital, in different sizes for different genders, packaged with a card listing the name of the seamstress and the bride who donated the gown. Many parents come directly to the organization, each with a heartrending story.

The response for donated wedding gowns and bridesmaids dresses has also been huge, and Scheller said they have more than 200 in storage for future use. Others donate boxes of ribbon or sewing notions, or send contributions to help with shipping and various expenses.

The Schellers now have a third daughter, Elizabeth Hope, who is 2-and-a-half years old, who Scheller calls her “rainbow baby,” meaning a child born after a loss and signifying that, “After every storm, there’s a rainbow of hope.”

A year ago, Scheller also became a certified bereavement doula, helping other mothers with labor or helping mothers and fathers with whatever they might need in time of such a loss.

“Being there for other parents helps them, and helps me to heal and honor Allison and keep her memory alive,” she said.

Allison’s Angel Gowns is always in need of more volunteer seamstresses, who come from counties around the area, but also outside the region — with one from Indiana. For more information, to request a bereavement gown or to make a donation, visit www.allisonsangelgowns.com.